Severe Case of NF 1
May 13, 2016
By: Brooklynn Bates
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I'M 20 AND AM CURRENTLY DIAGNOSED WITH
NEUROFIBROMATOSIS.{SEVERE CASE OF TYPE 1, MULTIPLE SETS OF PLEXIFORM NEUROFIBROMAS INSIDE BODY INTRUDING ON ORGANS AND SURROUNDING THE AORTA ARTERY.}
GASTROPARESIS.
KYPHOSCOLIOSIS. {FROM NF}
SCOLIOSIS DEGENERATIVE.{FROM NF}
BONE DEFORMITIES.{FROM NF}
IBS.
MENORRHAGIA.
DYSMENORRHEA.
CHRONIC FATIGUE SYNDROME.
CHRONIC PAIN.
RIGHT NOW I'M IN A CLINICAL TRIAL FOR A CHEMOTHERAPY DRUG THAT IS SUPPOSED TO SHRINK THE TUMORS CAUSED BY THE NEUROFIBROMATOSIS. IT MAKES ME EXTREMELY SICK AND I'VE LOST ABOUT 25 POUNDS BECAUSE OF IT. I'M LOSING HAIR AND IT'S TURNING SILVER. BUT IT HAS SHRUNK THE LARGEST TUMOR BY 12% SO FAR!
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